Getting Lots of Opinions

Part of what made this whole breast cancer diagnosis tough for me was all the decisions I needed to make under intense emotional pressure. Big decisions. I found that my brain could only process so much at a time and then I just couldn't take any more. All the internet articles, the blog posts, the research material, books-- all the information that is available with just the click of a keyboard key--it was definitely an overload of the senses. 

I turned to breast cancer survivors to hear their stories. They were tremendous resources about what to read, where to go for treatment, which doctors are the best, which treatments worked for them, etc. Everybody knows somebody with breast cancer. It's crazy how many people have a friend, sister, mother, daughter, neighbor, co-worker who is battling it. I was fortunate to connect with some wonderful women whose candor and willingness to share their struggles and treatment choices really helped me to wade through all the information.

There were two women I reached out to immediately when I got my diagnosis. The first was a co-worker who was battling stage 4 breast cancer who had a similar initial diagnosis to mine. I knew she'd have some wisdom and advice and she didn't disappoint! Among all her suggestions she recommended I start taking Modified Citrus Pectin once a day for its anti-cancer properties. She also recommended I eat a mixture of cottage cheese and flaxseed oil once a day as a healthy snack. (More on dietary approaches to cancer in an upcoming blog). We talked about different docs in the area and the pros and cons to different surgical procedures. This acquaintance is now my friend and she continues to be a great source of strength and inspiration to this day. 

The second person I reached out to I have never met in person. She and I connected through Beachbody Coaching-- I was randomly assigned to be her Coach when she purchased a BB workout program. We had become friends on Facebook and had shared some fun posting with others in my online fitness challenge group. I was stunned to learn she was diagnosed with breast cancer some time back and had watched her treatment progress and learned so much before I even knew I would be facing the same disease. I messaged her almost immediately after I got my diagnosis and she was so kind and supportive, sharing with me more about her own journey. Her cancer was different than mine and her treatment much different than what I would be facing, but she too was and continues to be a tremendous resource and inspiration.

Other friends connected me with people in their lives who were survivors. A student's mom reached out to me. Another teacher's mom was a few months ahead of me in the fight. A friend gave me the name and number of her friend who is a survivor and nurse. A high school friend connected me with his wife's best friend. A cousin introduced me to his co-worker's wife. And it goes on and on. At a time when my world was turned upside down I was the recipient of so much kindness and understanding from total strangers and friends alike.

I'm not going to dwell on the negative, but I will say that it is very interesting who stepped up to provide comfort and who didn't. Perhaps I will write about that on another day.

During the course of all this networking with BC (breast cancer) survivors I was also meeting with physicians to assemble a BC treatment team. I never knew that it took a small army to make a little lump go away and to keep it away. It's important to note that Denver, CO is a great place to have BC as there are numerous talented physicians and surgeons to choose from. Again, more choices.

I am insured through Kaiser so was assigned a random surgeon, plastic surgeon, and radiologist right away. I met with them and liked them, but took my time to get other opinions and to research the options they presented. I looked at participating outside of the Kaiser network in a clinical trial of a new type of radiation treatment-- IORT, or Intra Operative Radiation Therapy-- defined by Wikipedia as "applying therapeutic levels of radiation to a target area, such as a cancer tumor, while the area is exposed during surgery." The site goes on to say, "The rationale for IORT is to deliver a high dose of radiation precisely to the targeted area with minimal exposure of surrounding tissues which are displaced or shielded during the IORT." I met with the surgeon and was impressed with her knowledge of this new procedure and really felt connected to her through her warm bedside manner. I was super excited that although I was a tough case due to the location of my tumor and other factors, I would be welcomed into the study! Just one big challenge was in the way-- since it was out of network I needed to petition Kaiser to pay for the treatment or else pay for it out of pocket.

I really felt that this was the way to go and so we got the ball rolling with the petition, but as time went by something just didn't feel right about it. The more I thought and talked about it the more uneasy I felt about going through with the IORT. Whether or not Kaiser paid for it wasn't the issue-- I just had this gut feeling that it wasn't the path I should take. What a terrifying time for me-- everyone around me was so excited that I would be part of this clinical trial with a new procedure that was so much less invasive than any other treatment available, and I just felt so alone in the way my heart was leading me. I had been in denial all along, but from the very moment I heard the nurse say "cancer" on the phone I knew I would end up getting a double mastectomy. We had already invested quite a bit of time and money towards that end. How could I tell my family I had made up my mind to go in an entirely different direction?

While we were waiting to hear back from Kaiser I continued to meet with other docs. I figured if I found a doc who really inspired me and who was highly skilled, I would have the courage to go for the mastectomies.  One particular general surgeon's name kept coming up over the course of my investigation. Doctors, nurses, and patients alike raved about her skills and bedside manner. And she was another "she!" Nothing against male docs, but sitting down with her and talking, opening up about my fears and questions, I felt understood and heard. She clearly explained how she would take care of the cancer while helping me to achieve the most pleasing aesthetic outcome (which is something that's important to me). It was easy after that visit to take a stand and change my mind about my treatment plan. A skin-sparing double mastectomy it would be!!

My plastic surgeon (ps) came highly recommended, too, and luckily was within the Kaiser network as well! Score! I met with him about reconstruction options and my hopes were immediately dashed that I could have reconstruction the same day as the mastectomy. I was devastated, as I'm a busy PE teacher, mom, Group X instructor, and Beachbody Coach. I use my body all the time and had NO TIME for any down time!!! My ps explained that in my case (due to the location of the tumor and other factors) I would need extended reconstruction over the course of about a year. A year?!? At the time of the initial surgery, tissue expanders would be placed inside my chest under the pectoral muscles and remaining skin and would be slowly filled over time to stretch my chest into new "chest bumps." Every few weeks or so over the summer we would expand my chest back to my old size (or bigger) in preparation for the exchange surgery where the expanders would be taken out and silicone breast implants would be put in. Another surgery or two would provide me with nipples if I opted for that (more on that in an upcoming blog post). Lots more time and work than I expected...

I should tell you that as we moved forward with my final decision for a more extensive surgical approach, Kaiser wrote me a nice letter telling me I was DENIED coverage for the IORT I had petitioned for. It just sealed the deal for me-- I had made the right choice!

***I really feel like I need to make clear that I could never judge another woman's choice for medical treatment for her breast cancer. So many factors play into the treatment plan and each woman's body is so unique. I chose a very invasive and costly surgical procedure to deal with a tiny tumor, and I realize that many others would make a different decision.  I understand that by essentially cutting off my breasts I am not guaranteed a longer life or a life free of cancer. I also understand that there are no promises of any sort of outcome when it comes to breast cancer of any size or type. All I know is that I had to act with integrity in making my decision. I couldn't let anyone else sway me one way or the other. It needed to come from me.

7/15/15 Note:  Check out this site with inspiring quotes about breast cancer from celebrities who battled the disease: